Discussion Board Forums General Discussion New Diagnosis, lost, confused, scared…….

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  • #77794
    dcsailsungmail-com
    Participant

    Willow, I will look for the email and let you know how it goes, it is a very exciting trial and all the news/study results for melanoma y were very good. Immunothrapies and biotherapies are very cutting edge and every oncologist I have talked to has been very excited about the possibilities.

    The study MDs also are aware of all the supplements and food Don is taking and have no problems with anything. And as I said it seems to be helping. It also is a way to get hydration into him which is also another major struggle.

    As always thank you to everyone.

    Deborah

    #77793
    willow
    Participant

    Deborah,

    I emailed you to let you know about my sister also starting the PDL1 trial at UCSF this week. Would love to hear what your experience is and how Don fares.

    We will be receiving some financial help from the Lazarex Cancer Foundation (out of Danville CA) to offset travel and medical expenses as even parking in SF adds up! Please look for my email.

    Sincerely,
    Willow

    #77792
    leighang
    Participant

    If nothing else, try Ensure. After awhile, it was the only way we could keep nutrition going for my mom. Before she got to liquids only, potato soup and mashed potatoes were a great option as well. We also kept her on stool softeners and would add some prune juice to high pulp OJ to keep her bowels going and that seemed to work.

    I’m so very sorry for what you are going through with your husband. My mom was 68 as well and extremely active before her diagnosis – just another reason it was so hard to wrap our heads around it when she was diagnosed.

    Keep doing what you are doing – looking for treatment options as well as ideas to keep him comfortable and hydrated. It takes a village and I have found that the people on this site are so very helpful. It was too late for my mom; but I have found comfort in the fact that even AFTER her passing, these kind folks wrap their arms around you and try and offer any advice and all the support they have.

    Praying for you both,
    Leighan

    #77791
    marions
    Moderator

    Deborah…. the anti-PD-1 monoclonal antibody Pembrolizumab (MK-3475) study has gained a significant amount of interest in this country as well. It activates the immune system to boost anticancer responses of T cells in order to detect and attack cancer cells.
    http://www.biooncology.com/research-education/cancer-immunotherapy/cancer-immunotherapy?cid=bio_PS_00001360&gclid=COShhvbjkb8CFTJp7AodBjgAvw

    Pembrolizumab has been granted FDA’s Breakthrough Therapy designation for advanced melanoma and is being evaluated across more than 30 types of cancers, as monotherapy and in combination.
    I wish for the best of luck. The Dragon Slayer Shake sounds really good, but make sure to run it passed the physician prior to Don’s participation in the trial.
    Hugs,
    Marion

    #77790
    dcsailsungmail-com
    Participant

    Update:

    I wanted to touch back on the cachexia thread and share a nutrional website I found on wasting syndrome out of the UK. I have been making the Dragon Slayer Shake for Don twice a day and he is up 10 lbs and holding steady. Eating continues to be difficult for him after all the taste changes and digestive issues brought on by various chemotherapies as well has adequate hydration. The link is below:

    http://www.canceraction.org.gg/therapies-and-recipes/super-nutrition-recipes

    While not all the ingredients maybe familiar you can get most in a good health food store and there are substitutions you can make. For example for the triglicerides we are using coconut butter. For us it is healthy chemical free Ensure/Boost and seems to really be helping.

    Don is starting a clinical trial ( first dose today) for advanced solid tumors. The Xeloda he has been on according to the scans isn’t effective so we are exploring new territory. This is a biotherapy aimed at assisting the body’s own immune system and we are very hopeful. It has been successful for metestatic melenoma and now is being explored on other advanced cancers. The link is below:

    http://clinicaltrials.gov/ct2/show/NCT02054806?term=MK3475&rank=8

    Everyday is a new day, we are strong and positive and chanting like crazy!!!!

    Deborah

    #77789
    marions
    Moderator

    Deborah….cachexia appears to be a phoneme little understood. This link explains some of the details:
    http://www.cancer.gov/ncicancerbulletin/110111/page5
    Already you are increasing his calorie intake – I would add more yet. It worked for my husband until he was not able to digest fats well – we then had to curb back.
    Hugs,
    Marion

    #77788
    lainy
    Participant

    Dear Deborah, I am so happy to hear about Don’s shrinkage. That is great news. As for eating, look at my first post below your first post. I would also suggest talking to his ONC about it. He might have some other suggestions.
    Keep up the good work on the Chemo and please keep us posted. Go Don Go!

    #77787
    dcsailsungmail-com
    Participant

    Update….

    Well starting our 4th round of Cis/Gem on Monday. So far Don is tolerating the treatments fairly well, with fatigue being his biggest side effect. Also his Pet scan showed marked response to treatment with all tumor sites and lymph node activity being smaller and less hot. Yipee!!….even the MDs were happy to see it.

    However Don is continuing to lose weight, down to 158lbs. Keeping him hydrated is a challenge and I know that is part of the problem. We are continuing to juice and do smoothies as he can really only tolerate one meal a day usually lunch, the rest liquids and smoothies. I am wondering if this is because of the type of cancer CC is and his absorption of nutrients, fats, calories is being affected? We add protein powder to everything and keep a constant supply of ice cream for the fat, he has even started eating a little meat once in a while for the calories and fat.

    If the chemo is helping but yet his body is still wasting away….this worries and scares me as I feel that no matter what I feed him it isn’t enough.

    Hoping for suggestions and thank you.

    Deborah

    #77786
    marions
    Moderator

    Deb….a tidal wave of good wishes are heading your way.
    Hugs,
    Marion

    #77785
    willow
    Participant

    Just want to add my welcome and empathy to the shock that CC is. So ironic that you are an oncology RN! I think we have another member who was caring for her husband and is also an oncogist RN. Hopefully this can help to navigate “the system” of insurance and cancer care. Helpful but doesn’t make it any easier when your spouse has this rare and unpredictable cancer. I read recently another or posted that Megace helped her husband to have an appetite. Also want to add that my sister (unresectable Intrahepatic CC stage 4 diag July 2012) is being treated by the team at Stanford and has been very happy with them.. Though originally diagnosed by Kaiser in San Jose.. We quickly got to Stanford. Seems UCSF is better known for treating CC as far as Bay Area, but that’s just too difficult to get to for frequent appointments and chemo. I’ve heard chemo can be prescribed and then administered at places closer to your home but my sister feels that it’s better to have everything under one roof so paperwork and records are together and nothing gets delayed or lost. She has maintained her weight and appetite fairly well. Has had 3 kinds of chemo and the Y-90 radioembolization so far. I know every case is different but I just wanted to say hello from another member in Northern CA. Hang in there!

    #77784
    lainy
    Participant

    I want to wish DON all the best on his Chemo, Friday and I sincerely hope it ‘fits’ him well. Actually everyone here will be cheering him on. Thank you so much for keeping us posted, you are not alone!

    #77783
    dcsailsungmail-com
    Participant

    Again thank you for all the info and advise. Our biopsy showed that it is definitely CC in the supraclavicular node and with all his other lymph node involvement this makes his a stage 4. I have asked about interventional radiation and am still working on those answers. I also have been looking at clinical trials but it seems his staging excludes him from most.

    As far as the constipation he is already on the ducolax softener/laxitive combo pill twice a day as well as aloe vera juice, flax seeds in smoothies and an occasional epsom salt/water treatment. He is doing much better on that front. We will look into acupuncture too, I have heard great reports on it for symptom management.

    Don will be starting chemo on Friday, he is scared but glad to be moving forward. The waiting and no action is the hardest.

    Everyday is a new day, we are strong and positive and chanting like crazy!

    #77782
    Randi
    Participant

    Deborah,

    I had acupuncture that I began when I was receiving chemo and I have continued with it for years beyond. I found it relaxing and helpful to manage symptoms, however, as Marion said, I am not sure it would be sufficient alone for pain management. I highly recommend it though, as an adjunct to other therapies.

    I also received Reiki, which I found to be very helpful and taught me how to be mindful and self focused.

    If you have more specific questions about either of these (or anything else), please feel free to contact me at randi.barrell@gmail.com.

    -Randi-

    #77781
    marions
    Moderator

    Daily….have you added stool softeners to Don’s regular routine. Over the counter Ducolux (stool softener) not laxative worked best for my husband. We used a couple of capsules per day until regular bowel movement were achieved.
    Some swear by acupuncture treatments and I too believe that it can aid in the management of pain however; it may not provide sufficient relief for the pain Don is experiencing.
    You also had mentioned nausea and fever. These two symptoms may be related to the cancer. In re: to food consumption: I would try to have him consume calorie rich food or basically anything he likes to eat.
    Daily, do you know the extent of Don’s liver involvement with this cancer? Has he been staged? It is really important to connect with a physician treating a large volume of Cholangiocarcinoma patients. You might want to reach out to: an interventional radiologist, oncology radiologist, aggressive surgeon and medical oncologist. This disease warrants the attention of numerous specialists in their field.
    I hope for others to chime in and offer their support and advice as well.
    Hugs,
    Marion

    #77780
    dcsailsungmail-com
    Participant

    Thank you everyone for all your encouragement and helpful advice. We are currently on our second opinion with a possible further biopsy at Stanford on Friday, depending on what the subclavian biopsy taken yesterday shows. They are trying to determine if he actually has CC metastasis or some other lymphnode involvement so as not to rule out a possible resection.

    Don is on oxycontin 20mg BID for pain and seems to be better. But he is battling constipation and nausea as well. I feel like I am constantly giving him one drug or another to battle side effects. As an oncology RN I am seeing this from the other side and am trying to bring all my knowledge to the table to help him as best I can. He does do better with small frequent meals as suggested, but trying to catch him when he feels like eating is tricky. Smoothies and soups are working best so far.

    Does anyone have any experience with acupuncture for cancer pain management? Don really hates being on the narcotics as he feels groggy all the time and can’t function like he would like to, as well as the nausea/constipation issues that come with narcotics. Quality of life is everything right now while we are figuring things out.

    Thanks for listening.

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